Re: physical therapy for kids

[Guest guest]

Hi Lori,

My 8 year old was diagnosed about 2 years ago. She has fairly mild

symptoms, so I've been told, and has physical therapy once per month

through our insurance. This was not nearly enough for her since she

was too young to do exercises well on her own & we had a tough time

even being sure she was doing the correctly. Now we pay extra to have

her see a pilates instructor who is also a physical therapist the

other weeks. Over last summer we were so busy we took a break from

the pilates & really noticed a decline in her strength & flexibility.

Now we are committed to doing at least the once a week session. The

gains are not huge, but she is slowly gaining more strength & balance

in her core area & building some endurance strength, which are our

current goals.

Hope this helps!

[Guest guest]

Lori,

My CMT children have never gone to PT. Our doctor believes in just letting

them be active kids. That has worked well for us. I had PT as a kid and

it didn't do me any good so they kicked me out of the program .

Adam my most effected with CMT is also my most active kid. Nothing stops him.

In a message dated 1/30/2010 4:36:00 P.M. Pacific Standard Time,

mattheiss137@... writes:

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[Guest guest]

I'm sure it would depend on the severity of the symptoms but my daughter as she

was growing, went once a year through MDA to a neurologist who had physical

therapists who would work with him. The physical therapist would check things

like if braces were keeping keeping her feet aligned properly as she grew. The

therapist also gave exercises to do to help keep the tendons stretched. I don't

think more than one a year would have been necessary but the yearly checkup did

help them to see if corrections needed to be made as she grew and the

neurologist really did depend on feedback from the therapists as to what they

noticed.

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[Guest guest]

At Shriner's Hospital in Houston told me the same thing. He said that physical

therapy is not recommended for CMT kids.  He said just to let him be an active

kid.  I kind of not feel very comfortable with the idea, but they are the

experts.

Anita

[Guest guest]

Hi Lori,

My daughter (age 6) was diagnosed a year ago. She had been receiving PT since

age 1.5 due to low tone, but stopped when she started kindergarten. Now we swim

twice weekly, do exercises at home and do private Pilates lessons a few times a

month. We just bought a Wii fit plus system. They have a lot of

balance/strengthening activities that I hope will make the home exercises more

fun for all of us!

Sherry

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